Eyes on his work

An otherwise immobile ALS patient has written a book using only his eyes. Wu Ni reports in Shanghai.

Wang Jianhua can only move his eyes, but that hasn't stopped him from writing a book of more than 40,000 characters.

Wang lost all other motor control six years ago, and was diagnosed with amyotrophic lateral sclerosis (ALS), a rare disease that gradually reduced his ability to move.

The 58-year-old has lived in a bed at the Armed Force Corps Hospital of Hangzhou in Zhejiang's provincial capital for more than six years. He breathes using a ventilator, and a gastric tube transports nutrients to his stomach.

Wang's wife Wu Meili retired to nurse him full-time.

"His body is inert, but his mind remains nimble," she says.

"He isn't content to simply lie in bed. He always wanted to become a writer. So, I said: 'OK, you dictate and I'll transcribe'."

Celebrated French editor and ALS patient Jean-Dominique Bauby wrote his memoir The Diving Bell and the Butterfly by blinking his left eyelid.

But Wang can't even blink.

His eyelid is glued to his face and only his eyeballs can move.

He communicates by moving his eyes as his wife points one-by-one to 47 Chinese character radicals, 10 numbers and 11 punctuation marks printed on a special board. Wang moves his eyes when she arrives on what he wants to say. She jots down every radical he indicates until a word forms.

"On the best days, we can finish more than 100 characters a day," Wu says.

"But it's usually exhausting to finish a few dozen characters."

It's through this tedious process Wang and Wu finished Warm the Frozen Heart.

The book contains more than 20 poems, a song Wang wrote for his daughter, and diary entries.

Chinese call ALS patients "frozen people" because they lose the ability to move, but their minds remain as quick as ever.

"He was versatile and romantic," Wu recalls.

Wang often sent her love poems when he was in the army, she says.

The couple's daughter Wang Lu recalls her father was talented at playing the violin, accordion and harmonica.

"He taught me the instruments when I was young, but I never got as good as him," she says.

"He's very gentle and full of thoughts. I guess that's why he has such a strong desire to express himself."

Wang's spirit has also inspired his wife.

"My husband never considered giving up on life or quitting therapy," she says.

"He has always yearned to live, even if he can't breathe or swallow food."

Some paragraphs in the book reveal his persistence:

"I thought I had reached the end of my life, while my heart calmed down because fear is unwanted. You may walk in blooming flowers or swim in green lakes. Anyhow you gain tranquility and loveliness there.

"I fly an airplane slow and low, skating over hills full of shrubs. I fly so freely."

The book was published in 2012, and its electronic version was launched on China Telecom's e-surfing reading platform in early January.

Half of the revenue will be donated to a Chinese Medical Doctor Association ALS program.

The program's director Liu Jie says Wang has been sustained by the comfort and care from his family. Most ALS patients die within two to five years of diagnosis.

"Many ALS patients become depressed and commit suicide," Liu says.

"Wang is tough to write a book with his eyes."

There are about 200,000 ALS patients in China, the Chinese Medical Doctor Association reports. There's no cure for the disease, which causes respiratory failure.

The association's program has helped about 5,000 financially challenged patients by providing free medicine, respirators and therapy, Liu says.

The association advocates policy reform to cover the treatments under the country's medical insurance system, Liu says.

Wu sold their house and moved into the hospital.

The couple is working on a new book that will mostly feature verses and essays.

"It's boring work," Wu says.

"But I'm really grateful he's still alive and communicates with me."

Contact the writer at wuni@chinadaily.com.cn.